Sunday, August 5, 2012

Surgery veteran, but still nervous

I learned in July that I have to have ear surgery because I have something called a cholesteatoma. I'm an old hand at surgery, as I realize repeatedly as I fill out forms at various doctor's offices (recent ones include the ENT, head/neck surgeon, and imaging clinic for a head CT).

Me as a baby
(we don't have any photos of me
before my first cleft lip repair)
Cleft lip and palate
I had my first surgery when I was a few weeks old, because I was born with a cleft lip and palate. (Cleft lips and palates occur in 1 or 2 of every 1,000 babies born in the United States each year.) Throughout my childhood I had multiple surgeries. The cleft lip was corrected when I was a baby, but the palate surgeries continued until I was 15, when I had a pharyngeal flap. Until then I had to wear a speech appliance called an obturator, the bulb of which fit into the hole in my palate. Over the years the doctor shaved away the bulb until it was very small. Without my obturator (which had to be taken out at night), my speech was not very clear. My poor mother had to put the obturator in and out when I was a small child, and I would gag and cry.

Ear tubes
Before I got braces
A side effect of having a cleft lip and palate is a propensity for middle ear fluid buildup and infections (in addition to feeding problems, dental abnormalities, and speech difficulties). When I was a small child, I had many ear infections, and my mom tells me that they often didn't know when I had an ear infection because I didn't complain about the pain. I remember taking penicillin and actifed as a young child, not a favorite activity back then because the pills were uncoated and extremely bitter. I had ear tube surgery twice as a child, and in those days they did not allow I missed many formative years of swim lessons and have never been a strong swimmer.

Oral surgery
As mentioned above, the dental abnormalities resulted in years and years and years of orthodontia. My parents took me to the School of Orthodontics at Oregon Health Sciences University, where I received all my orthodontic treatment for free. I was a special case and challenging and fascinating to the orthodontic students...lucky me. Over the years of orthodontia, I had to have about 10 teeth pulled. I remember fainting during one of my oral surgeries because I hadn't eaten anything that morning. I also had wisdom teeth surgery at one point.

Senior photo (before jaw surgery)
Jaw surgery
I had jaw surgery my senior year in high school to correct a severe overbite and put a prosthesis in my chin. This meant six weeks of having my jaw wired and drinking only liquids. The first day I came home from the hospital, my sister had made my very favorite cookies (chocolate oatmeal drops) and I'll never let her forget it!

Unfortunately, my jaw relapsed to its previous position and I had to have the surgery repeated when I was 19, the summer after my college freshman year. I was not happy, to say the least!

After jaw surgery (at PLU)

Caesarean sections
I had a long break from surgeries until 1996, when Christopher was born. When I went into premature labor at 24 weeks, my doctor told me that I had a choice: I could deliver vaginally and Chris would die, or I could have a radical c-section and he would have a 50% chance of survival...and all future births would need to be by c-section. Well what mother would not have made the choice I did? It probably eased my mind that I am a surgery veteran and tend not to be a worrier. I trust the surgeons to take good care of me and that I will recover without any complications.

My c-sections were pretty brutal. The first took ages to recover from because I did not rest and recuperate--I was spending every day in the NICU by Chris' bedside. I had to battle pharmacists for pain medication because they thought I was selling it on the street! The next two c-sections were rough because I developed some kind of immunity to the epidural...I felt far too much! And because of all the scar tissue, my recoveries were long and painful.

I am lucky that the only unscheduled surgery I've had is my c-section with Chris. On all other occasions, they were planned ahead. I've never had a life-threatening incident that prompted surgery.

Cholesteatoma surgery
Now I have a sort of benign cyst growing in my ear, which I've probably had for a few years. When I met with the surgeon, he said "if you choose to have the surgery..." but I said, "from what I have read about this condition, there's not much choice involved." But you always have a choice, he said. Well, if I do not have the surgery, the cholesteatoma could continue to eat away my ear bones. My hearing will get worse, and I could lose it altogether in that ear. I could have dizziness and severe headaches.

And even worse, I could suffer from a brain abscess, erosion into the facial nerve (causing facial paralysis), labyrinthitis (whatever the heck that is!), meningitis, and spread of the cyst into the brain.

So it's not really much choice, is it?

Surgery is scheduled for August 17, and I will probably have to have another one in 6 to 9 months, because the surgeon tells me that the ear likes to grow back to the way it was before. Lovely. Sounds eerily similar to jaw surgery.

The hardest thing will be that I'm not allowed to blow my nose after the surgery for TWO WEEKS. That, for someone with chronic sinusitis, will be the toughest part.

The little guy who had to have
surgery before he was 2 pounds
It can't be helped. It's a pain in the neck (or head, actually). Compared to dear friends and family members who are undergoing cancer treatment, it's practically inconsequential.

I trust the surgeon. I'm not nearly as nervous as I was when my tiny 1-pound-5-ouncer had heart surgery...or my mom had surgery on her eyes. I find it much easier to contemplate surgery on myself than on my loved ones.

I truly believe that all my multiple surgeries, various health issues related to the cleft lip and palate, and Christopher's prematurity and NICU stay have made me into a better person. I'm stronger, more resilient, more hopeful, and more appreciative of what I have.

Surgery doesn't terrify me. I'm not thrilled about it, though. I'm a surgery veteran, but still nervous. I'll be glad when it's over and can add it to my long list of mountains climbed and battles won.


  1. Oh Marie, I had no idea all those surgeries you'd had to endure, especially as a youngster. What strength and energy and passion despite it all! Will put a reminder on my calendar and do some chants for you (my Zen form of prayer) on the 17th.

  2. Thanks, Jill. I appreciate the chants and the comments!

  3. Marie, thank you for telling your amazing story. You were absolutely adorable as a baby :) I know your life history is where alot of your inner strength has come from !! and I bet you still have some in reserve for your upcoming surgery. Prayers and Hugs..Love Laurie